Sunday, October 24, 2010

On another note, I wanted to let you know what AJ asked me today. I had told him I went to the Giants game last night and we talked a little about it. At the end of the speech session, AJ said, can we pretend we are at the game and I am Steve (therapists husband)? Then, something good happens and you hug me? I said, “What?, where did that come from?” He said, “I don’t know it just popped into my head” I kind of laughed it off and he turned a little red and I sent him to class as I normally do. I think it is obviously “puberty” has arrived....

Last week my husband attended the team parent meeting. He was confronted in front of the group by a couple of parents about our son, AJ. My husband was not at the game he was asked about. I was there and was organizing the team snacks when Aj evidently hit or pushed a child on the other team after being taunted. I was never aware nor told that this had occurred. Our message to Aj was, and continues to be, that this type of behavior is never acceptable.

At the beginning of the season I told the coach (as I do every coach, camp counselor etc.) that Aj has learning and attention deficits and sometimes has difficulty controlling his emotions when in competitive situations. I asked him to let us know if he needed assistance, had questions etc. My husband has since had the same discussion with him. If a parent had asked me about Aj, or sat and chatted with me- I would have likely had a similar conversation. We are not hiding anything, and yet we don’t need to put him on public display for every parent on every team to examine and judge. At the end of every season or school year I always write notes thanking the coaches/teachers who have embraced and supported Aj. It does take a village to raise a child and I am so grateful to those who commit to ALL children in our community.

Aj is a joy in our lives. That having been said, parenting a child like Aj can be a rocky and emotional road. I imagine he travels a similar road. My message to you as parents sharing this community is that families like ours desire and hope for acceptance, support and friendship. Those of you have offered this to mine and other families-I am so grateful. Those of you who gave a cold shoulder, commented that you are “tired of putting up with” my child and sought to shame us in a group forum are not “fixing” any one in my family. In the future I recommend calling upon your grace, integrity and compassion when addressing other families.

Wednesday, August 11, 2010

Sad news for our family. The family we all play with is moving out of state. Each of us has a playmate in that family-so this is heartbreaking news. Currently the Mom and Dad K. and Baby J. are looking for houses in AL. I am here this week with my 2 and their other
3 kids. The five kids are ages: 11, 11, 9, 8 and 5. Funny thing is you'd be hard pressed to identify which are mine. They all look like siblings and I look like a woman confused about how birth control works.
The K. kids are delightful children. Really, having 5 kids is not so bad at all! The nutty part is due to shear volume of keeping track of who has bathed etc. The K. family make it easy. For example:
I ask all 5 to sit and do some reading. AND THEY DO! My kids compliance goes up when they are here. Also, these kids are grateful beings. They may ask for an extra cookie etc-because they are kids-but they do not expect it. They do not demand it and they do not whine. Now I know their parents will say this is not always the case. It isn't with any kid. They get up in the morning and they get dressed with out being asked, and asked and asked.
I LOVE THESE KIDS. I will miss them dearly. My son will miss his only friend. My daughter will miss a good friend and Pops and I will miss dear grown-up friends.
Hats off to Mom and Dad K. They have excelled at being good parents and raising thoughtful, curious, grateful and loving children.
I am off work this week and it is supposed to be a week of play. Monday we went mini-golfing, yesterday was the movies- Cats vs Dogs the Revenge of Kitty Galore. More tomorrow.

I have had wonderful morning the Mother's Day!
Pops and Al went shopping early this am while Ki stayed and cuddled on and off with me while I snoozed.
I was later awakened by my kiddos with a plate filled with a homemade breakfast mcmuffin (english muffin, egg, ham and cheese), cinnamon roll and strawberry. I got my coffee and read my paper in bed. My brown dogs joined me on and off and cleaned any food items that strayed from the plate.
Aj got 2 bouquets of flowers at eh store-one for me and one for Granny. He awoke her by bounding into her bed with a top volume, off-key song about Mother's Day. The fact that she is still with us after awakening clarifies the fortitude of her physical make up.
Ki presented me with a mug that she colored herself that contains sprouting cosmo seeds. Her decorated card reads:terrific, hugger, pretty, smart, amazing, love.
She is so open about her feelings, "I love you so, so, so very much Mama." She is my sweet pea.

Aj gave me a letter he wrote at school. It reads:

Alex K 5/17/10Here are some reasons why I love my Mom1. She cheers on me when I get a hit, a basket, or a goal. Shes the loudest cheerer in the fans. She is very loud.2. She helps me on my homework. Even though if it was 9:30 at night, my mom can still help me with my homework. She wants to get my homework done.3. She gives me lots of hugs and kisses. When I've done something, a really hard thing, she gets so happy she cries. It is so cute.

Monday, April 19, 2010

A week before Spring break I found out that my Dad was on oxygen full time, living alone and could no longer drive (you know-like to the store for groceries) and was moving to Seattle and selling the house I grew up in. His wife's family is so wonderful and are helping Dad and his wife every step of the way. BUt I wanted and needed to help, too. Ki and I flew down the Fri before Easter, rented a car and drove to Dad's house in Rancho Bernardo. Rental car was a KIA that was shaped like an egg and light blue. I yelled to Ki "Pedal harder!" as we entered the freeway. This gutless wonder was however timely from a seasonal sense as it resembled an Easter egg. We ended up staying in a hotel-which was fun. I helped Dad and Ki got to spend some time with him. I also got to meet Dad's wife's grand daughter who is just the coolest gal. Kids loved her too.
AJ and Pops drove down to SAn Diego and met us. After being with my Dad-we headed off for visits to Sea World (still my favorite) and Lego Land.

Sunday, April 04, 2010

Last Sptring break we had a stay-ca-tion in San Francisco. We stayed 3 nights.
We took kids to the Zeum. They recorded their first music video.
Props, music and words provided by Zeum. My kids had never heard this song before-so AJ is reading lyrics. This is funniest at the end. Enjoy

Ki and I are here in a hotel in Rancho Bernardo (San Diego).
Ki asked Pops to leave a note for the Easter Bunny explaining that she was not in Redwood City-but rather in Rancho Bernardo.
We are both wondering if and how the Easter Bunny will leave a basket and/or eggs in a small hotel room...But I have faith he is a creative fellow.

Sunday, March 14, 2010

Both kids stayed home sick. I have little voice. A problem for a stage manager and speech therapist.

I've learned how to put tape on the stage so we know where to put the bases of the sets. Our young tribe of Merry Men are still trying to figure out which way to exit the stage. Wholly, they are a very inattentive lot. The back stage crew of 7th and 8th graders are all armed with high-end phones and spend time playing on them. I let them today as the pace was painfully slow at times-I told them tomorrow no more phones. They might get distracted- and I don't want to look bad next to an 8th grader.

I came home pooped and seemingly still sick a bit myself. Now at 6 pm Aj has a temp of 101 (day 4) and Ki a temp of 102 and she just vomited. Pops and Granny not feeling so great either.
This is going to be a tough week. Play rehearsal/shows are M to Sat 530 pm to 930 pm and Sat afternoon.

Saturday, March 13, 2010

Ah, it is time for the school play again. Last year it was the play Aladdin and my adventures were in the green room. Aj played the "neighbor" and Ki was a merchant selling nuts. One of her lines being "Someone stole my nuts!". Do note the irony in that line.
This year the play is a comedy version of Robin Hood. Aj is Little John and Ki is one of the merry men. Aj is one of the main 8 characters and has quite a few lines! I am so proud because he was chosen over other "typical" boys. Ki is of course thrilled to be playing a guy.
Aj has one scene in which he is supposed to pick his nose. It is helpful to know that in the past the picking of nose has been so chronic it was discussed in IEP's (note plural s). This boy has been rehearsing for this part for YEARS. So imagine my startle when Aj told me he was nervous about everyone seeing him pick his nose on stage-even if he was faking it.

This year I am behind the stage as one of the stage managers. My adventures will be noted from that venue. Well, so I was also put on the costume committee. Those who know me well just burst into hysterical laughter upon reading that assignment. That would be because my idea of dealing with a shirt missing a button or pants that need hemming is to not wear either of them. Clearly, I was not a lot of help there.
Today (Saturday) was the casts first day at the theater (10 to 5). I am getting over a flu bug and have a very marginal voice. Aj has had headache, sore throat and fever for the last 3 days-so he stayed home.
The sets are tremendous, just amazing. The music will be, too.
The cast is HUGE. Over 40 I think. Lots to keep track of.
Robin Hood and Maid Marian were told they will not have to kiss in the show. A relief to all children as the thought of touching someone of the opposite sex is horrifying. But I think when Maid Marian is an adult she will regret not being able to say she kissed Robin Hood.
Today we practiced with sets and music/light cues. I came home with a throat ache and head ache and crashed. Back on Sunday am 9 to 12.
Sandy is coming to see the play-kids are thrilled. Grandpa, Uncle Jim and Aunt Mary will come Sat for the matinee. Pops, Granny and I will watch final performance on Sat night.

Thursday, March 11, 2010

I had Aj stay home from school today as he was complaining of the same symptoms I have had. Headache and sore throat.

I had about 2 hours of clients so I left him here with Granny. He wanted my Apple (computer) and I said fine and left it with him.

Later at home again I sat down to check my email.

A million windows were open-the Disneyy Channel, Wikipedia and Askk.com.

One of the ASK search boxes read: can i see a belly button from women

Followed by: can i see a belly button from pregnant women

Next read: can I listen to beat it

Followed by: can I listen to beat it with music

My notes and observations:

My boy can independently search on the internet!

He can even refine his search!

He is not a boob guy, leg guy or breast guy. Aj has always been a belly button guy.

He still darts up to mannequins and lifts their shirts to examine the authenticity of their belly

buttons.

Aj's teacher had her last day of work last week and is due to have her first baby next week.

This has been exciting and intriguing for Alex. Especially since he loves babies. Yesterday Aj, Granny and I went to a second appointment with Granny's full-term pregnant MD. On the first visit he whispered to me, "Does the doctor have a baby in her tummy?". This visit I saw him starring at her belly in a mesmerized fashion. She was sporting a VERY outy-pregnant-lady belly button. When she stepped out I asked Aj if he saw her belly button.

"Yah!". I explained that belly buttons get very stretched by pregnant bellies and either stick out or sometimes kinda disappear like mine did when I was pregnant.

With disbelief and concern he blurted, "Yours is gone!". I verbally assured him it was no longer gone and visually assured him by flashing my belly. The MD returned to give her parting recommendations. Aj telescoped his eyes on her belly button. Ever so slowly, he kneeled-his eyes now level with protruding jewel.

It happened quickly, the MD never noticed. But clearly - Aj had noticed the jewel and it is still on his mind.

Sunday, February 28, 2010

I wrote this letter to a woman who is a friend-but not a close friend. Last fall her son completely unexpectedly died in the middle of the night. It was tragic. It hit home even more so in that our sons were the same age and carried the same diagnosis. I went to the funeral along with hundreds of others. I sobbed. But I held off on contacting her until now. Today it seemed right. I remember when my 20-something year old friend lost her Mom. I learned from her that the pain goes on long after the funeral and all of the follow-up calls and meals have occurred. As I was feeling over-whelmed by all the to-dos, forgot-to-dos, wish-I-hads this was very cathartic. People, family, friends, love. That is what matters. I refer to her son as "Elvis" in copy of the letter. Thanks Elvis-you helped me today.

Hi-

You pop onto my mind fairly frequently and I thought I'd write. I can only imagine that decades and yet only seconds have gone by since you lost your guy.

And I know all the very many people who love your family were probably most present initially. So here I am now.

Every so often I see a boy that looks like Elvis and it catches my breath. Then I think how that must happen to you constantly.

He was a model for me when I have talked to Aj that he has autism/PDD (what the fuckk ever). Initially I couldn't use the word "autism" because to him that was how I had talked about my friend's kids who had difficulties and that was why-for example our little buddies who are non-verbal or with limited language.

He was then put off that something that described them could describe him. So I told him, "Well-you know who else has autism? Elvis does".

So thanks to Elvis for being such a lovely model. Aj then referred to him as, "My friend Elvis who has a-little-bit-of-autism."

We lost our dear 13 year old lab last June. Aj asked me once if I thought Elvis was playing with Sierra in heaven. I told I thought yes he was.That I think Elvis really liked dogs and now Sierra has someone to play fetch with.

So I cried when I wrote this. And I delayed writing it because I thought it would make you cry, too. But I decided you probably already cry.

And I wanted you to know that there is still a lot of love out there for you and Elvis and your family.

Monday, February 08, 2010

I found a research study summary in my professional journal that brought a smile to my face (see link below). Basically a longitudinal study of kids from age 5 to 25. Participants included kids with language delays/disorders, kids with speech (articulation disorders) and typical kids. The majority of the kids with language difficulties persisted with lower language, cognitive and occupational skills then typical peers at age 25. I am not surprised by that. What made me happy is the news that the individuals rated their quality of life to be just as good as the typical group. There was of course a strong correlation with family support.

Long ago I decided that my goal for Aj was for him to be happy. Not Harvard, Stanford or maybe even any college graduate-but happiness. My hope is that he will grow up to be a happy individual who can contribute to society. I am confident this will be the case.

Thursday, February 04, 2010

Granny needs her hair done
She needs that sore on her leg looked at
She needs to go to the bank
I need to go to attorney for medical power of attorney and all that stuff

Which reminds of aj
the incomplete iep
the difficult behaviors
the lack of friends
the therapy he should be having
the dentist he should have seen
the unschedule eye exam

Which reminds me of Ki
my sweet girl who daily wanders alone on the playground
who is uncomfortable in her beautiful skin
who is sensitive and searching

Which reminds me of my business
the ways i am not contributing to its success

Which reminds me of my husband
my sweet partner
who is truly a partner
he contributes to caring for kids, cooking, cleaning, playing ball, driving to appointments...
I went out with him once last year
I kept my end of the bargain sometime then too

Which may remind me of me
the friendships that I have left unwatered
the mess i live in
the unscheduled doctor, dentist, eye appointments

This ugly cycle
Every so often it grabs me
pulls my breath and sucks at my soul

Then I stabilize
not totally- because all of that is always there
But it isn't always so big
And I can breathe
And my soul sort of settles
Soon it won't all feel so big
That is how it goes

Wednesday, February 03, 2010

Today we talked, Granny and I.
I told her he was coming to visit.
He'd be here for dinner.
What time she asked.
Then she asked again.
She said she didn't know he was coming.
I snapped at her. I told her- I told you, I'm sorry you don't remember.

I snap at her often, daily, many times daily.
I feel angry at me, fatigued, guilty.

He comes, we have dinner.
We talk, he shares stories from the past.
Toward evenings end Granny nods and agrees when conversation warrants.
I sense her comments driven by obligation, not understanding.

We plan for lunch tomorrow.
The three of us.
He'll pick you up, we'll meet at my office.

Goodnight we say. So nice to see you.
Close the door, prepare for bed.

About Me

I am a Speech-Language Pathologist (Speech Therapist) with over 25 years of experience. I specialize in evaluating and treating feeding difficulties. Feeding evaluations, and many therapy sessions, are done in collaboration with the Occupational Therapist at Sage Therapy. Izzy, a golden retriever, is a specially trained therapy dog who rounds out our team.